Posting for the husband of a fellow chiarian:
"Hi-
I'm really at loss for words. My wife has Chiari. She had the operation 20 years ago by the man who "perfected" the operation. My wife has always had headaches on a daily basis and neck pain. In the 15 years my wife and I have been together I have never seen her in so much pain as she was this past week. Monday morning 3:30am she wakes up in excruciating pain. We go to the emergency room which is always a nightmare in itself but when you go there with Chiari it is a whole lot worse because no one EVER knows what your talking about and you never get the support you really need. They took a cat-scan and of course found nothing. No one ever finds anything. Her MRI's are always good and any other test she takes. She is at her wits end. Why after all these years is she having this much pain? I could understand if her pain was always this intense, but this week was nothing I have ever experienced with her. Has anyone else gone through this? She has heat pads, cooling pads, Advil, Tylenol, muscle relaxers and nothing seems to even alleviate her pain. We live in NY. If anyone has any information or a specific doctor they use that actually knows what's going on that would be greats! She just went in December to the Chiari Institute in Long Island and of course all results came back "normal". Please, help."